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David Fitz on 16 September 2016

Category: Uncategorised

Replies: 13

Last updated: 26 September 2016

Webcast Details: CML Patient Day 2016 - Saturday, 24th September
by chrissie (Sep 26)

PS Olivia - try Blink for watery eyes ( sold over the counter in any pharmacy). Recommended by my optician who explained that although eyes are watering, this is actually a symptom of dry eyes ( He

by chrissie (Sep 26)

Hi Olivia and David Fitz
Well, we all completed the walk although the wind was ferocious and we were walking against it which made it hard going. At least it didn't rain so the conditions

by Olivia (Sep 24)

Hi Chrissie
The hospital visit went fine, I'm still on 200mg and the side effects are certainly less annoying - though I still get occasional cramps and frequent watery eyes. My

by chrissie (Sep 23)

Thank you, Sandy. I always wanted the extra 0 and now I have it - long may it last! I wasn't surprised to fail DESTINY when I'd never reached MR4 but If I can keep it down there for a
Category: Uncategorised

Replies: 13

Last updated: 26 September 2016
skiinglaketahoe on 23 September 2016

Category: Uncategorised

Replies: 0

Last updated: 23 September 2016

CML Web Chat by UCLH hospital
by skiinglaketahoe (Sep 23)

Hi
Just to let everyone know that UCLH (my hospital) is having a web chat this coming Tuesday afternoon. Questions can be submitted in advance and the web chat can be followed on twitter or by
Category: Uncategorised

Replies: 0

Last updated: 23 September 2016
sandy craine on 23 September 2016

Category: Uncategorised

Replies: 0

Last updated: 23 September 2016

UK CML Patient Conference 2016 - Links for Webcast Viewers
by sandy craine (Sep 23)

The UK CML Patient Day is an annual conference that gives attendees the opportunity to listen to talks from national and international medical experts in CML. The day will cover topics ranging from
Category: Uncategorised

Replies: 0

Last updated: 23 September 2016
dadbags on 3 September 2016

Category: Uncategorised

Replies: 6

Last updated: 19 September 2016

reduction in my dosage from 600mm of gleevac to 300mm
by David Fitz (Sep 19)

That is an excellent result for you!
In time, and after holding your response for a while, are you going to consider trying to stop taking imatinib altogether and see if you maintain your response?

by dadbags (Sep 14)

hi its me again--well so far so good my reduction in dosage seems to work-PCR RESULTS 0.0000--hope it continues-ty all

by dadbags (Sep 6)

hi sandy thank u very much for responding to my post-no BULL both u guys(nigel()really helped me get through this week---ty again very helpfull -BEST REGARDS STEVEN

by dadbags (Sep 6)

hi nigel-thank u for answering my post u put my mind at ease-ty very much-i hope it works out for u-it takes a lot of balls to go in tha trial program of no GLEEVAC--saw my oncologist today
Category: Uncategorised

Replies: 6

Last updated: 19 September 2016
sandy craine on 17 September 2016

Category: Treating CML

Replies: 0

Last updated: 17 September 2016

Closer to a Cure?
by sandy craine (Sep 17)

Just a heads up on the article I have posted .... see yellow feature box on this or the Home page. Some of you may be aware that Prof. Holyoake's team in Glasgow have been working for many years
Category: Treating CML

Replies: 0

Last updated: 17 September 2016
chrissie on 14 September 2016

Category: Uncategorised

Replies: 0

Last updated: 14 September 2016

Bloodwise Exeter walk
by chrissie (Sep 14)

Hi Everyone
I'm walking from Exeter to Starcross on Sept 24th to help raise money for Bloodwise. All donations gratefully received
http://www.justgiving.com/Chrissie-Mortimer
Please excuse basic
Category: Uncategorised

Replies: 0

Last updated: 14 September 2016
Bee on 5 August 2016

Category: Uncategorised

Replies: 2

Last updated: 12 September 2016

Talking of eye problems.....
by Bee (Sep 12)

Hi Sandy and everyone
Ted's minor strokes were definitely caused by clots, rather than
bleeds, so now they are trying to find out where they came from.......to try and prevent any more.
He has

by sandy craine (Sep 7)

Hi Bee,
How is it going with Ted and his eye problems/stroke? I hope all is well,
Sandy

by Bee (Aug 5)

Hi All
My husband Ted has had CML for 15 years with no real problems except the usual side effects from Imatinib. However a few months ago he noticed he couldn't see to read his music properly.
Category: Uncategorised

Replies: 2

Last updated: 12 September 2016
David Ryner on 27 April 2016

Category: Uncategorised

Replies: 5

Last updated: 12 September 2016

Treatment of CML with dasatinib in Scotland
by nigel (Sep 12)

Great news David, thanks for the update and help in getting this though, England to follow soon we all hope, and expect !

by David Ryner (Sep 12)

On schedule., the SMC have published their recommendations for dasatinib treatment. We are very pleased to see that dasatinib is recommended as a treatment for CML for:
(i) newly diagnosed adult

by David Ryner (Aug 9)

We have been informed that the SMC will publish their decisions on 1st and 2nd line dasatinib treatment on the 12th September. We remain optimistic that their decision will be to recommend dasatinib

by David Ryner (Jun 29)

We were advised by the SMC last week that a PACE meeting for 2nd line treatment is to be convened and we have now completed the paperwork that will allow us to attend the meeting in Glasgow on the
Category: Uncategorised

Replies: 5

Last updated: 12 September 2016
Bob_India on 7 September 2016

Category: Treating CML

Replies: 3

Last updated: 12 September 2016

Worried about CML progresing :(
by Bob_India (Sep 12)

Thanks Sandy and David.
My next BCR-ABL is due next month and I will update about them to you.
As far as my Acid Reflux concerned I will try to do what you both have suggested.
I have one

by sandy craine (Sep 10)

Hello Bob,
" The only problem I have is platelets. Also since I come from the North-East part of India my doc says that that region people tend to have a low level of platelets

by David Fitz (Sep 9)

Hi Bob,
Why are you worried about progression? Has your doctor given you reason to worry, or is there something else that makes you concerned?
You have mentioned your platlets a lot, but what is

by Bob_India (Sep 7)

Hi All,
I am Bob from India and following this forum for a long long time. I was detected with CML in December 2008 at the age of 25 and started my Imatinib Glivec from January 2009. So it
Category: Treating CML

Replies: 3

Last updated: 12 September 2016
KerrieLouise on 10 September 2016

Category: Side effects

Replies: 4

Last updated: 10 September 2016

Advice needed
by chrissie (Sep 10)

Hi Kerrie
Sorry to hear about your problem. You can certainly do without this. If i were you I would contact my doctor - GP/haemo/specialist nurse asap and ask for advice.
Hope things improve

by Parklife (Sep 10)

Hi Kerrie.
I am male with CML so can't comment direct, however I just wanted to mention someone I know who was diagnosed many years ago (she is doing well now!) to maybe make you feel better. One of

by KerrieLouise (Sep 10)

hi
I am on Imatinib 400mg
my white blood count was 31.6 and after 1 week and 4 days of treatment is down to 18.4 my platelet count is 1250 now it was 1841
the nurse said my

by David Fitz (Sep 10)

Hi Kerrie,
Welcome to our little club. No doubt it wasn't a membership you wanted but we're all here to help each other.
Do you have a copy of your latest blood report? I wonder perhaps if
Category: Side effects

Replies: 4

Last updated: 10 September 2016
dadbags on 7 September 2016

Category: Uncategorised

Replies: 2

Last updated: 9 September 2016

NEWBIES WHO HAVE QUESTIONS
by David Fitz (Sep 9)

Ho JoAnn,
Well, it all depends on what your doctor has said to you.
Concerned? Maybe not. But that doesn't mean you shouldn't take things very seriously.
Can you fill us in a bit on what

by JoAnn (Sep 8)

Hi I am newly diagnosed. My Drs don't seem too concerned. Should I be?

by dadbags (Sep 7)

hi all-im 15yr veteran of CML-if anyone has any questions or has anxiety about CML -just send me a message-im only a PATIENT not a dr.but if i can ease ur pain just give me a holler-steve(dadbags)
Category: Uncategorised

Replies: 2

Last updated: 9 September 2016
sandy craine on 5 September 2016

Category: Uncategorised

Replies: 0

Last updated: 5 September 2016

UK CML Patient Day - Sept. 24th 2016
by sandy craine (Sep 5)

Prof. Maihri Copeland who is organising this years patient day (Manchester) has asked if we can suggest someone who is willing to give a 5 minute talk about their experience of TKI therapy. John-
Category: Uncategorised

Replies: 0

Last updated: 5 September 2016
RodM on 1 September 2016

Category: Treating CML

Replies: 1

Last updated: 1 September 2016

Spirit 2 - Post Trial Availability of Dasatinib
by David Fitz (Sep 1)

That is good news. Coupled with the upcoming appraisal of TA241 (including the use of dasatinib as first line treatment) and TA251 (including use of dasatinib of second line treatment) NICE guidance

by RodM (Sep 1)

I'm about 4.5 years into the trial, on Dasatinib and the availability of Dasatinib on the trial protocol ends in around March 2018, the 5 year anniversary of the last enrolled patient.
It has
Category: Treating CML

Replies: 1

Last updated: 1 September 2016
AlisonB on 16 August 2016

Category: Uncategorised

Replies: 7

Last updated: 1 September 2016

Consultant wants to take me off Imatinib
by Olivia (Sep 1)

My experience is slightly different from those above. I was on Spirit2 for 5 years, and had good results from imatinib. I asked about going on the Destiny trial, but my hospital is not

by darley (Aug 31)

I think you'll struggle to find someone else with a consultant that's suggested what yours has. Put simply it's not best practice and indeed it's precisely what my

by AlisonB (Aug 18)

Thanks to all who have replied. You have given very helpful advice and I will do more research. Nigel - my only symptom on Imatinib has been puffy eyes, so have been very fortunate. I would like to

by darley (Aug 18)

I'm in the DESTINY trial and just posted results at 24months.
Got to say I agree with what everyone here has said. Ideal would be within the auspices of clinical trial.
Category: Uncategorised

Replies: 7

Last updated: 1 September 2016
sprycml on 24 July 2016

Category: Side effects

Replies: 12

Last updated: 28 August 2016

Questions from one newly diagnosed and on Tasigna
by bdmemphis (Aug 28)

I was 35 when I was diagnosed in March 2015. Male. I was on Tasigna before I had to switch to a new TKI. Like you I lived a pretty athletic life prior to diagnosis. I'm in the

by grells (Aug 4)

hi there. i am newly diagnosed too (march 2016). in response to your first question i take ibuprofen for the aches and pains i experience. don't get them all the time - perhaps on days of

by chrissie (Jul 29)

Thank you again. David, Yes, I'm taking 20mgs and it's working just great ( at the moment). Good to now that there's a choice if I need it.
Best
Chrissie

by David Fitz (Jul 28)

Last thing from me on this ... I imagine your doctor has prescribed you 20mg. That's the normal starting dose. If it's not working 100%, just take more (discussed with your doctor, of course
Category: Side effects

Replies: 12

Last updated: 28 August 2016
David Ryner on 28 July 2016

Category: Uncategorised

Replies: 3

Last updated: 24 August 2016

Great news on the availability of bosutinib in England
by David Ryner (Aug 24)

NICE has today published their Guidance document for bosutinib. You can access it here: https://www.nice.org.uk/guidance/ta401
My previous posts have given details of the clinical criteria that

by David Ryner (Aug 4)

Yes David you are correct.
A criteria an adult patient would have to meet in order to be treated with bosutinib is a previous treatment with at least one TKI.
Currently in England this effectively

by David Fitz (Jul 31)

That is excellent news.
If I read this correctly, does that mean that a patient would still need to be treated on imatinib or nilotinib before being eligible for hosting?

David

by David Ryner (Jul 28)

As of tomorrow bosutinib will be available for all its licensed indications rather than the more recent heavily restricted limitations placed on its use via the current Cancer Drugs Fund (CDF).
For
Category: Uncategorised

Replies: 3

Last updated: 24 August 2016
gordyboy on 22 August 2016

Category: Uncategorised

Replies: 4

Last updated: 22 August 2016

CML and COPD and Bronciectsis
by gordyboy (Aug 22)

Hi David,
Yes I am newly diagnosed with CML (amongst others) but my main concern was COPD Exacerbations. The CML started with routine blood tests which showed a high white blood cell count.
Have

by David Fitz (Aug 22)

Hi again Gordon,
Are you newly diagnosed? If so, and you have any questions at all we'll all be delighted to help as best we can. You will also find useful info under the "CML Facts"

by gordyboy (Aug 22)

Hi David,Thanks for your reply, it's all a bit of puzzle for me at the mo but am pleased to learn that Imatinib and Amoxycillin/Doxycycline are compatible.
Regards
Gordon

by David Fitz (Aug 22)

Hello and welcome to our rather exclusive club that we'd all rather not be in! :-)
Imatinib and amoxicillin don't have any known interactions. Nor does imatinib and doxycycline. There's
Category: Uncategorised

Replies: 4

Last updated: 22 August 2016
Lynette on 20 August 2016

Category: Uncategorised

Replies: 2

Last updated: 21 August 2016

Pleural Effusion
by Lynette (Aug 21)

Hi Sandy, thank you so much for your prompt reply. The flyer you have attached and your understanding of PE are incredibly useful. Thank you once again and thank you for this amazing forum. Have a

by sandy craine (Aug 21)

Hi Lynette,
First bit of advice is that if you feel something is not quite right then cut out the GP and go straight to your haematologist. That said, at least now you have a clear diagnosis

by Lynette (Aug 20)

Hello Everybody,
After being treated for a long lasting chest infection and hayfever for the past 2 months and having my suggestion of pleural effusion as a side effect of Dasatinib dismissed, my gp
Category: Uncategorised

Replies: 2

Last updated: 21 August 2016
Kate on 20 September 2011

Category: Uncategorised

Replies: 3

Last updated: 18 August 2016

Nilotinib and Liver Function
by chrisk (Aug 18)

Hi Kate,
How long did it take for your liver levels to return to a level where you could continue with the drug?
Chris

by Kate (Sep 27)

Thanks for your advice Sandy. For now I am not taking milkthistle as they would prefer me not to take any herbal remedies as they are trying to work out why the enzymes are so highly elevated. I am

by sandy craine (Sep 20)

Dear Kate,
Given that TKI's are processed through the liver it is not surpirsing the sometimes- and in some people- normal liver function is affected. As you can see from the information below-

by Kate (Sep 20)

Hello all,
I was diagnosed in September last year and have recently had a medication change from Glivec to Nilotinib (as part of a trial.)
I have been on Nilotinib for three months now and things
Category: Uncategorised

Replies: 3

Last updated: 18 August 2016
Samsam on 14 August 2016

Category: Reproductive health

Replies: 3

Last updated: 15 August 2016

Nilotinib effect on pregnancy when male is the patient
by sandy craine (Aug 15)

Hi, please read the following discussion thread (just lower down this page). I think there is a lot of positive feedback on fathering children whilst remaining on therapy.
http://www.

by Samsam (Aug 15)

Thanks david....ill definitely give it a look soon....

by David Fitz (Aug 14)

Hi!
If I were you, I would invest the time in watching this recording a a conference Nigel Deekes (from this board) and I were at a few months ago. The conference was CML Horizons, and there was a

by Samsam (Aug 14)

Hi
Im looking to get in touch with people who have fathered children while on nilotinib. Im on nilotinib and am planning to have kids. I went off nilotinib for 3 months to make sure effect on sperm
Category: Reproductive health

Replies: 3

Last updated: 15 August 2016